WHEN WILL THEY LISTEN?

Anyone who reads any of my posts here has heard me talk about the many difficulties of caring for a child with chronic diseases. Many are born with these illnesses and live their entire lives with them such as my son Alex. There are others that develop their disease, syndrome, or other condition in their youth. As an adult, we understand our sickness and what is needed: Surgery, necessary blood tests, or examinations. It is not so for our little ones.

If you could imagine what it would be like to have strangers poking and prodding every inch of your body, what would you think? Children are at the mercy of the doctors, nurses and lab technicians. As they grow, there are medicines, appointments, surgeries, procedures and all the other things that are ordered for their illness. Everything is completely out of their hands. No control. They have anxiety and depression. In my experience, Alex never wanted to make friends near home or at school. He told me later in his life that he didn’t want anyone to be sad or hurt if he died. Whether we as parents realize it or not, the thought of death follows them everywhere. If you were in the hospital and emergency rooms as much as they are, you would have a fear of dying also.

The one thing that is missing from our children’s health care is mental health. The fear and grief over the life that they will never live is devastating. Their abilities are challenged. If he/she has severe asthma, there is no running or playing sports. If it is a sever case of Ehlers Danlos plus Osteogenesis Imperfecta with deformed feet and hands, there is little that she can do. This is what my niece Natalie was born with and lived in a body cast for the first year of her life. These sweet children will never be like the others. Parents may tell them over and over that they are special, that God made them like that for a reason, or whatever they believe will magically give them the self-esteem and courage to continue on their journey. It does not take long for a child to become addicted to the drugs they are given for the pain. We as parents feel helpless while we watch our babies deteriorate physically and emotionally.

You might wonder why there is not a mental component to the care of children with chronic illnesses. You probably know that it is because of money. I think that you cannot believe that any amount of money is worth one life taken from us. The fact is that it happens all the time. Statics say that children with chronic problems are much more likely to commit suicide than a child without illnesses.

This is exactly why I am blogging. There must be change in our medical system. I have been asked by a well-known charity that has government funding to develop a model medical center in central California to give my professional opinion on how I thought things should change. It was a difficult task but I wrote it and submitted it to the senior vice president and his response was that he agreed with everything that I had written. But. Yes, there’s a but. He said that he did not believe that medical staff would be able to make those changes. Nor would they want to spend the money that way. But I have not given up. I know that I can make it easier for the children and their parents.

This is the article that got me on my soap box tonight. It is so sad. Please read and see how we need these changes now. I live with the same illness that the girl in the article had.
Dysautonomia International initially wrote this on their site:

Very sad news. Many in our community have heard the news that Christina Tournant, a 17-year-old MIT student who had POTS for the past two years, committed suicide last week. Her health had recently taken a turn for the worse and she had to return home from college. It can be extremely difficult living with a debilitating chronic illness, especially when the plans you had for your life don’t work out as you hoped they would. Our hearts go out to Christina’s friends and family.
According to the National Alliance on Mental Illness suicide is the 3rd leading cause of death among adolescents in the US and chronic illness is a risk factor for suicide. Whatever age you are, if you or a loved one are depressed or having suicidal thoughts, please seek help as soon as possible. Reach out to family, friends, online support groups, medical and mental health professionals, or the National Suicide Prevention Hotline (1-800-273-8255).
The JED Foundation provides emotional health and suicide prevention support for college students and parents. http://www.jedfoundation.org
The National Alliance on Mental Illness provides support, headlines and educational information on depression and other mental health issues. http://www.nami.org/Find-Support

Thank you for sharing such personal thoughts. For teenagers who are in school they have the option to be seen by the school psychologist. Parents with teens living with special needs should consider sending in a written request for assessment. Here is something else that might interest you. Best wishes.

What an eye-opening piece. It’s terribly sad to think of children struggling with these sort of illnesses and the effects mentally it must have on them. It’s been said that childhood is among the sweetest of times in our lives – a period in which we are free from care and run about and play with friends.

Children experiencing chronic illnesses are robbed of this sweet, innocent time. I hadn’t thought about it until reading your piece. This is a good thing you are doing – making people like me aware of the battles these children face.

So true on the mental health issues. My daughter is a cancer survivor (Leukemia at 4) and while her last round of chemo was 19 years ago, we are still dealing with the fallout and NOBODY wants to cover mental health issues at all, and it’s almost impossible to prove any cognitive issues on chemo, even though I know that is what we are dealing with. At best, you are lucky to get the meds partly covered. And it’s not just kids with chronic illness. It’s mental health in general. Society talks a good talk, but doesn’t follow up with the walk. So very frustrating and sad.

That is so true. The mental health issue is a difficult one. And you brought up another issue that should be addressed. Each time a child has something done to improve their situation, or save their lives, there are new and different problems that arise.

Yes! And I hope I didn’t sound ungrateful – I am very thankful for the treatment that saved her life and that she is with us today – we are blessed! I just wish there was more in place to follow up on the survivors and help them with these after issues.

“It does not take long for a child to become addicted to the drugs they are given for the pain. We as parents feel helpless while we watch our babies deteriorate physically and emotionally.”

I understand the shame attached to being addicted to pain medications, and why there’s not the same stigma attached to other drugs taken for chronic conditions, like insulin. I’m just wondering what the alternative is to treat the kind of pain these kids have. If their pain isn’t treated, perhaps they would deteriorate even faster? Perhaps the suicide rate would increase, as it has with adult pain patients?

Instead of looking for paid mental health services, pain patients should join free support groups, especially children. Just like with adults, when patients understand how pain works, what’s happening in their brain, then it’s easier to both accept and manage.

Just a suggestion, but one of the groups I can think of that has chapters in almost every state is the Girl Scouts. Perhaps if you reached out to this group, ya’ll could come up with a plan to create chapters for children who are pain patients? A Girl Scouts for kids in pain? Isn’t there one for kids with cancer? Can those groups be expanded? And thanks for all the work that you’re doing.

Thank you for your comments. The truth is that there have been some non-narcotic pain meds that have been researched but it is difficult to get the pharmas to pick them up. There is one that is close to distribution. Fingers crossed.

Fingers crossed that they work. Fingers crossed that they do less damage than opioids, at least when it comes to addiction.

The only problem with new drugs is the lack of long-term studies, especially on children. From Vioxx to Bextra, two drugs given to children and now banned by the FDA — just because a drug isn’t a narcotic, that doesn’t mean it can’t be harmful.

On the other hand, there have been studies on the long-term use of narcotics which show no damage to other organs, like the damage caused by acetaminophen. In fact, I read one study that linked the use of Tylenol in infants to autism.

I try to keep up with new pain medications, and I haven’t seen anything that’s different than what’s already legally available. Of course, I probably don’t have access to the information that you do.

I just want you to be prepared for the possibility that this “change” might not really be something different, after all. Big pharma has a habit of calling reformulations something new, when it’s the same old drugs. I hope that, even if you disagree with me, you’ll keep an open mind to assess the issues I’ve described.

It’s not that hard to advocate for a new drug to treat pain, especially if it’s not a narcotic. But even if this drug can replace opioids for some patients, it won’t replace them for all patients. And the problem of a lack of mental health support still isn’t solved with a new pill.

I’m sorry to be so wordy and so adamant about some things, but I wouldn’t be if I didn’t know what I was talking about. After almost 30 years of constant pain, I can only hope that my own research and experiences give me some credibility. If not, well, at least I tried.

What a sad state of affairs we live in. MI is still swept under the rug and even if there were infinite amounts of money available, there would be those who always find another use for it and continuously ignore the problem. Thanks for posting this!

This is incredibly sad that the programs that are needed cannot become reality because of money. It might have helped this young lady to still be alive. Very sad about her suicide. My heart goes out to her family.